The LAR is the important first step in the state’s budgeting process. This represents the agency’s priorities and wish list. The Legislature will factor some of this in when determining the agency’s budget. This is important because these dollars, while large, represent services to people with intellectual and developmental disabilities. The table below shows what was budgeted for the 2014 and 2015 biennium compared to what the agency is asking for in the 2016/2017 biennium. Keep in mind that Texas budgets according to two year cycles, so 2014/2015 represents the combined budget of both years as does 2016/2017. The column at the end shows you the change. A positive number means that the agency is asking for more, a negative number indicates they are asking for less, and a zero means essentially no change.

As requested by DADS, there are major changes to the funding of community based alternatives, primary home care, and SSLC capital repairs/renovations. DADS is requesting increases in hospice, guardianship, community attendant services, CLASS, DBMD, regulation, administration, and IT program support.

In addition to the LAR, DADS is also requesting several exceptional items. Frequently the LAR requests by strategy represents no change to services. In other words, this is the cost for the status quo. The exceptional items represents new things the agency would like to do.

The first exception item is funding to maintain the current caseload for many of the waiver programs (HCS, CLASS, DBMD, MDCP, Texas Home Living Waiver, non-Medicaid services, and PACE). This exceptional item is asking for approximately 111 million dollars over the biennium. In their justification, DADs mentions that the current biennium (FY 2014 and 2015) had the funding to expand waiver slots, particularly in HCS, but a failure to continue funding those into the next biennium (i.e. a failure to grant this exception item) will result in people losing care.

The third exception item deals with funding to reduce waiver interest lists. If funded, this exception item would add 15,145 slots for community-based services and cost approximately 724 million dollars over the biennium. It would fully fund the STAR+PLUS community-based alternatives, the deaf-blind multiple disability lists, would serve about 20% of the people on the interest lists for HCS, MDCP, TxHmL, and CLASS. For In Home and Family Support and IDD Community services, it would serve about 10% of the people on those interest lists.

The fourth exceptional item deals with promoting independence for individuals with intellectual and developmental disabilities (IDD). This represents a little over 85 million dollars to either move people from facilities or keep people from having to go there. If funded, it would move 500 individuals from large or medium-sized intermediate care facilities, 216 children aging out of foster care, 400 crisis slots for individuals for individuals at imminent risk of entering a large/intermediate care facility, 120 individuals with IDD in the state hospitals, and 25 for children transitioning from a general residence facility.

The fifth exceptional items seeks to enhance community IDD services for individuals with complex medical and/or behavioral needs. This is an exceptional item that is meant to address things that the Sunset Commission noted. DADS is requesting approximately 57 million dollars over the biennium to the fund new crisis respite and behavioral intervention programs, and increase the ICF and HCS rates to encourage treatment.

The seventh exceptional item relates to protecting vulnerable Texans. This item requests approximately 41 million dollars over the biennium to hire new guardianship supervisors, expand the Lifespan Respite Care program, increase the HCS cap on dental expenses to $2000 per individual per year, to provide assistance to small HCS facilities for required fire sprinkler systems, and would increase regulatory tools.

The either exception item deals with the state supported living centers. This one asks for approximately 112 million over the biennium to finance repairs and renovations, to finance a replacement plan for vehicles, and to reclassify some positions.

The system that provides services to individuals with Intellectual and Development Disabilities (IDD) is currently in a state of transition in Texas. With the passing of Senate Bill 7 in the last legislative session, the state is redesigning the system that provides waiver services to individuals with IDD and eventually moving those services to managed care. From conversations that the advocacy groups are having with some of these managed care companies, it’s already clear that there is going to be a large and painful learning curve for them with regards to how Texas operates and with regards to the needs of individuals with IDD.

I’m going to be the Chair of the Arc of Texas’ government affairs committee. When I spoke with the Arc’s leadership about this, I laid out my personal concerns moving into the next two years. As you can see from the list below, there is a lot going on right now:
1. Recap of the Legislative session. What happened, how will this impact families and individuals with IDD?
2. Keeping up with the implementation of SB7. The Devil is in the details.
3. Since SB7 is now a fact, how is managed care working in other states? What can we learn from the experience of other states and how can we apply it to take advantage of what works well and how can we avoid the problems?
4. Keeping up with the state supported living centers and the implementation of the Department of Justice agreement.
5. I’m thinking there was also a Department of Justice settlement about nursing homes…
6. In the spring, the Office of Civil Rights put out a dear colleague letter that potentially radically changes the landscape of kindergarten-university athletics for people with disabilities. This may greatly expand the access of individuals with disabilities to athletics in public schools and may also have some unintended long-term consequences to the Special Olympics.
7. If anyone could point me to some places to begin getting up to speed on education and transition issues I’d really appreciate that.
8. Finally, there are a lot of unintended consequences to legislation. For example, ECI as we know it is going to change over the next few years. By requiring families to pay more of the cost, and by having ECI bill insurance, the result is that families that can will begin going to private providers for ECI services. The current ECI providers are slow to adapt to these changes and may not survive… It would be good to be able to think through and anticipate some of these things.
9. Remaining flexible so we can respond to unanticipated topics as they come up…

For obvious reasons, the big issue is the implementation of SB 7. The question comes up about how to stay informed and how to have an impact on the process. There are a number of ways:

In August, the Health and Human Services Commission of Texas published a report on their website. This report is an external quality review that was performed on STAR+PLUS home and community-based services. This is an extremely important and timely report because of the passage of Senate Bill 7 in the 2013 Texas Legislature, which will gradually shift the waiver services for individuals with Intellectual and Developmental Disabilities (IDD) over to managed care (i.e. STAR+PLUS). First, the full report can be accessed at: http://www.hhsc.state.tx.us/reports/2013/EQRO-STAR-PLUS-Waiver.pdf

This report was developed via a combination of surveying individual service plans (ISPs), telephone surveys, and face-to-face interviews. For the telephone surveys and face-to-face interviews, individuals whose ISP was studied were contacted. Of the 1207 people eligible, 202 returned surveys. Of those 202, 23 people from the Harris County area were interviewed in the face-to-face interviews.

The results are interesting:
• Almost 93% receive services at home.
• Almost 68% of members live with their families, almost 20% live alone, 10% live in an assisted living facility.
• The most used services are personal assistant services (95%), emergency response services (90%), and respite care (57%). The least used services are minor home modification (2.6%), meals (almost 4%), and dental services (4%).
• 28% of the members have some college education, a degree, or more than a college degree. 42% have a high school education or lower.
• 91% of the respondents have a caregiver that helps them with daily activities. 16% of those caregivers are unpaid family volunteers.
• The top five reasons for needing a caregiver include health, assistance looking after themselves, assistance with nutrition, assistance getting around, and assistance with daily activities.
• Almost 80% of the respondents identify their health as being fair or poor. Only 6.5% identified excellent or very good for their health.
• 67% of the respondents have moderate-to-high depressive sympotomatology.

The survey also looks at the service coordinators and the ISP:
• 84% of the respondents were satisfied or very satisfied with the help they received from their service coordinator in the past six months.
• Almost three quarters of respondents were included in the decision-making process of their ISP, were included in decisions about services, felt their ISP was respondent to their needs, and felt that their plan included services that were important to them.

In the face-to-face interviews, participants were asked about positive and negative experiences. The following negative experiences were reported by 31-45% of those people interviewed: poor communications, delays in care/services, poor phone experience, red tape, poor quality transportation, poor quality dental care, and poor communication with doctors.

Each service coordinator reported caseloads of 200-500 cases, per coordinator.

The study makes a number of recommendations:
• There should be more stringent standards regarding the frequency and methods of contact between service coordinators and members.
• There should be a reduction in caseloads of service coordinators (which will also allow for more frequent contact).
• Existing protocols for contracting with home health care, transportation, and other types of vendors should be evaluated to ensure high-quality service.
• There should be a vendor certification process to assist with quality.

The population studied includes Medicaid and some Medicare-eligible individuals. They may or may not have IDD. This is, however, very interesting as it may help map out potential concerns for the implementation of SB7. Concerns include service coordinator caseloads, depression, communications, delays in care/services, red tape, and some quality control issues.

The Texas Comptroller has certified that the funds are available for the appropriations bills that came out of the 2013 Legislature. There is mixed news for people with intellectual and developmental disabilities and their families.
With regards to the Department of Assistive and Rehabilitative Services (DARS) and Early Childhood Intervention, there is good news and bad news for Early Childhood Intervention (ECI):
 ECI is seeing an almost 18% increase in its funding, from ~$270 million for the current biennium to ~$318 million for the upcoming one. Both respite and the administrative oversight of ECI are being funded at the same amounts as in the current biennium. In addition, the Legislature wants to see the number of hours of services per child per month to increase from an average of 2 hours to an average of 2.9 hours.
 The bad news is that the ECI appropriation has a rider. The rider says that anyone receiving ECI services who has a family income greater than 400% of the federal poverty level must pay 100% of the cost of the services.
It’s great that ECI funding is expanding and that the Legislature wants to see more hours of services per month per child. It will be interesting to hear DARS’ forecasts on how this will impact the number of children served. The rider is concerning and has significant long-term implications for both providers and the people that will be receiving ECI services. This will mean that some families will opt not to receive the services because they cannot afford it and others may be driven to private providers, which means that current ECI providers will have to learn how to be competitive with private providers.
With regards to the Department of Aging and Disability Services (DADS) and their long term services and supports appropriation, there is mixed news that reflects the shift to managed care that is being driven by Senate Bill 7. First, some programs are seeing a reduction in funding:
 Primary home care (~42% reduction): Provides non-skilled personal care services. Reduction is due to STAR+PLUS and this service will eventually be eliminated.
 Day Activity and Health Services (~67% reduction): Another casualty to STAR+PLUS.
 Community-Based Alternatives (~22% reduction): due to STAR+PLUS.
 ID Community Services (~7% reduction): Administrative expenses are being transferred elsewhere and some of the individuals receiving services are being transferred to the Texas Home Living Waiver.
 Promoting Independence Services (~5% reduction): Another casualty due to STAR+PLUS.
 Hospice (~5% reduction)
There are a number of programs seeing an increase in funding, including several waiver programs that are seeing a large increase in funding:
 Community Attendant Services (11% increase): Seems to be balancing out the reduction in primary home care.
 Home Community-Based Services (HCS) (15% increase)
 CLASS (10% increase)
 Deaf Blind Multiple Disabilities (38% increase)
 Medically Dependent Children (6% increase)
 Texas Home Living Waiver (63% increase)
 Nursing Facility Payments (4% increase)
 Medicare Skilled Nursing Facility (6.5% increase)
 Balancing Incentive Program: 14.7 million
 State Supported Living Centers (~2% increase)
It should be noted that none of the bills that sought to establish realignment committees for the State Supported Living Centers (SSLC), closure of the SSLCs, or bills of rights for people with intellectual and developmental disabilities passed. There are no riders directing DADS to close SSLCs, or explore closing SSLCs, only a rider to develop a ten year plan for the SSLCs.
The expansion of the waiver programs is great news. But the reality is that managed care is coming as a result of Senate Bill 7, so we’re going to be in uncharted territory soon. The fact that the Legislature will not move on the SSLCs is interesting.

Senate Bill 7, which shifts the Medicaid waiver services for individuals with intellectual and developmental disabilities over to managed care organizations, has passed the Senate is has passed the House as of May 21. However, while in the House one of the representatives amended the bill in a major way. Representative Turner amended the bill by eliminating the redesign advisory committee, which would have been the mechanism for stakeholder input into what they new system will look like. Below is a copy of the letter that I sent to my representative about this as well as Representative Raymond, who oversees the House Human Services committee. Feel free to cut and paste and share with your elected leaders.

“I hope that this finds you both well.

As you are both aware, the House has been voting on SB7. Yesterday Representative Turner amended the bill by striking the IDD redesign advisory committee. This is a huge concern and without that committee I as a parent am unable to support this bill.

As you both know from my previous communications and visits with you, I feel that stakeholder input is absolutely critical to the long-term success of this bill for the state and for the people that will be receiving services. Without that stakeholder input, the state does now know what this population needs or how it experiences services. Without this input, the state does not know if managed care organizations are providing the services and the environment that this population needs. The redesign advisory committee provided an accountable mechanism to providing and receiving stakeholder input. Sweeping this into another committee that is not designed for this purpose is criminal.

Many parents like myself and many advocacy groups supported SB7 only because of the presence of that advisory committee. If that has been eliminated, then I can no longer support that bill and I strongly urge that Representatives Sanford and Raymond both withdraw their support of the bill.

Senate Bill 1361 is being heard by the Senate Health and Human Services Committee on Tuesday, April 23rd. This is a bill that seeks to establish a bill of rights for persons receiving long-term services and supports under Medicaid programs. As we seem to be moving inexorably towards managed care, this is a short, four-page bill that establishes some important principles especially for individuals with intellectual and developmental disabilities (see the text here: http://www.legis.state.tx.us/tlodocs/83R/billtext/pdf/SB01361I.pdf#navpanes=0 ).

If passed, this legislation puts the following principles into state law:

Individuals have the right to live as independently as possible

Individuals have the right to control their own lives

Individuals have the right to receive services and supports to secure and retain employment

Individuals have the right to be able to self-advocate or receive that help from family or guardians

Individuals have the right to be involved in system redesign

Individuals have the right to receive services and supports that address individualized needs, that close the gaps that exist in current services and supports, that are part of a quality management process, that are overseen by qualified staff with decision making powers, and that are accessible and transparent.

Individuals have the right to select their own qualified provider

Individuals have the right to have access to both institutional and home/community-based services and supports

Individuals have the right to retain existing health care coordinators and physicians

Individuals have the right to periodically change health care providers, coordinators, and managed care programs

Individuals have the right to be fully informed about their rights and obligations

Individuals have the right to have access to grievance procedures

I realize this is a philosophical document. However, if passed it provides the foundation behind any system changes to long-term services and supports. Many people are concerned about their loved ones being swallowed up by soulless managed care programs that are more concerned about efficiency and bottom line than in the people they care for, legislation like this would help to reassure guardians and family members that the state has some compassion and interest in taking care of this vulnerable population.

The filing deadline for legislation in the 83rd Texas Legislature is coming up fast. There are two new bills that have been filed that have implications for the intellectual and developmental disability community. The first is a relatively short bill by state Senator Rodriguez, the second is a very long bill by state Representative Raymond.

Senator Rodriguez has previously filed two important bills on the state supported living centers. One, SB 729, would establish a realignment commission for the centers. Another, SB 1045, would allow for the system to be evaluated. Both bills are important bills. On the 7th, Senator Rodriguez filed SB 1361, which is a bill of rights for people receiving Medicaid long-term services and supports. This bill is important especially in regard to the changes to the system that are in progress via legislation. The bill begins with the statement that: “It is the policy of this state that, to the extent provided by state or federal law or policy, each recipient of Medicaid long-term services and supports under a state benefits program has the right…” It goes on the list things like living independently, control the recipient’s own life, receive the supports necessary for competitive employment, be a participant in designing/implementing/monitoring the outcomes and effectiveness of delivery systems, receive services that are based on their individualized needs, receive services that are monitored for quality, to receive services that are effectively coordinated, and that allow individuals to retain their existing providers. Some of this bill is philosophy, which is fine, but some of it would provide some safeguards especially in light of the possible shift over to managed care.

Representative Raymond, who is the chair of the House’s Human Services committee, filed HB 2721. Essentially this is the House’s version of Senate Bill 7, which would shift the acute and long-term services and supports for the waiver recipients (HCS, CLASS, TxHmL, and DBMD waivers) over to managed care. Like SB7, the bill has great intentions. The goals include provide services to more individuals in a cost-effective manner, improve access to services, promote person-centered planning, integrate service coordination, promote high-quality care, etc. Like SB7, this is a huge bill and will have a major impact on people with IDD and their families.

Let me begin with the things that I like about this bill. First, there are extensive stakeholder input requirements in the bill:
• Like SB7, it would establish a system redesign advisory committee that would include stakeholders. This committee has an important role all through the process, basically up until 2024.
• Like SB7, the state will roll out pilot programs to test the concept. Stakeholder input is required on the pilot programs.
• HHSC is required to receive and evaluate stakeholder input when transitioning each of the waivers over to managed care.
• Stakeholder input is required for developing a quality-based payment plan to providers.

Second, the bill emphasizes the need to ensure there is continuity of care when transitioning from the old waiver programs to the new managed care approach. Third, when discussing acute services, the bill states that HHSC will use STAR+PLUS “or the most appropriate integrated capitated managed care program delivery model.” So there is some wiggle room on using STAR+PLUS. Fourth, the bill mentions implementing basic attendant and habilitation services. Fifth, and this is needed, the bill will establish specialized training for family members/caregivers/providers of people with IDD that are at risk of institutionalization and behavioral intervention teams to help prevent institutionalization. Finally, the bill provides for a wellness screening program to help prevent diseases.

So there are some things to like about HB 2721. There are also concerns. It’s a huge bill and a sweeping change and the Devil is always in the details. People with IDD have complex, varied needs. No two are the same, it’s more complicated than breaking a leg. It’s also something that cannot be fixed or treated, it requires a life-long, continuous approach to services. It’s unclear how effective any managed care organization is going to be. The current system is incredibly complex to navigate, add transition and having to learn a new system on top of that and family members will be confused and overwhelmed.

Some version of this bill or SB 7 will probably pass and become the future. With that in mind, input is critical at every step of the process. That starts now by contacting your legislators. That continues by having strong advocates on the system redesign committee and by providing input in every way possible about concerns and experiences. It must be kept in mind that the people drafting the legislation and eventually the rules and procedures don’t have first-hand experience with this system and don’t understand how complex the services are for individuals with IDD. As a result it’s very important to educate them about this.

Today I spent the day in Austin, largely at the state capitol. This was an interesting day as there were a number of things happening:

Task Force for Children with Special Needs meeting

Senate Bill 7 hearing

Visits with legislators

Task Force for Children with Special Needs:

The Task Force is established by legislative statute and is a state-agency driven entity. It’s purpose is to develop a strategic plan to meet the needs of children with special needs and is meant to integrate all the Health and Human Services agencies as well as agencies like the Texas Education Agency. I was appointed by the executive commissioner of the Health and Human Services Commission as a parent member. As a parent, I don’t get to vote but I do get to offer plenty of input, sometimes more frankly than the agency staffers are used to.

This was a short meeting because of the Senate Bill 7 hearing. Basically it was to brief us on the Task Force’s two big initiatives. The first is a comprehensive website, geared towards families, of the services available to children with special needs. It’s meant to be a parent-friendly umbrella website that is easy to navigate. More than that, it will have videos, information on developmental milestones as well as programs/services available by age (i.e. help prompt parents for the things they don’t know to think about), location of programs/services, etc. It is also meant to have a regional component to help direct the parent to resources in their area. The Task Force implemented a state wide research effort using focus groups, phone calls, and surveys and now the design of the website is in progress (funding for everything has been secured or is in progress with the current Legislature).

The second initiative is a crisis prevention/intervention service that would incorporate multiple agencies. This is in the beginning stages of planning but it’s very needed and a great idea.

Senate Bill 7 Hearing:

DADS conducted a hearing on Senate Bill 7 this morning that ran at the same time as the Task Force meeting. I decided ultimately not to attend this as I felt I’d be more impactful visiting legislators at the capitol (more on this later). I’ve written everybody about my thoughts about this bill and I think the decisions have already been made on this one…

Visits with Legislators:

I spent about four hours visiting legislators, staffers, and committees. I visited with mine, Sen. Paxton (staff) and Rep. Sanford (both the representative and his staff). In addition I visited with Rep. Carter (staff) from Dallas, Rep. Raymond (staff), Sen. Nelson (staff), and both the Senate Health and Human Services committee staff as well as the House Human Services staff.

Let me begin by stating that I didn’t make any appointments with anyone ahead of time. While this is courteous, I did not want anyone to have a chance to prepare. I also, intentionally, came dressed as a parent of a child with special needs as opposed to a lobbyist. So I showed up in khakis with a tie, but no expensive suits. In each office, I walked in and announced that I am the parent of a child with Down Syndrome and I’d like to talk to someone about legislation and appropriations.

To start with my legislators, I spent a great deal more time with them and their staff than anyone else. I focused my discussions with them around the following:

Senate Bill 7

State Supported Living Centers

Balancing Incentive funds

I think SB7 is going to pass. So I had several talking points on this bill. It has great intentions – more services to more people at reduced cost to the state. Having said that, the devil is in the details and the people pushing the bill don’t understand the details, which is critical in this circumstance. First, there needs to be significant stakeholder support at all stages. That means as invited testimony (after all, the parents and family members – not the state agencies, are the experts on this topic), voting members of system redesign committees, and at each stage of legislation and rulemaking. Second, there needs to be an understanding that this is an incredibly complicated population and service delivery driven by assessments is going to miss a lot. I made the point that this population requires medical care, dental care, many types of therapies, 24/7 care, employment care, housing, etc. To illustrate the complexity, I used an example from the state supported living centers. Back when the Department of Justice issued its findings about the old state schools, it used two specific examples as examples of a lack of oversight by the schools. In one example, a state school resident had been eating latex gloves. In another, a different resident was eating the stuffing from a chair. I used these examples and explained that they are examples of how profoundly some individuals with intellectual and developmental disabilities are affected and how difficult it’s going to be to assess this and come up with services to prevent it. I made these SB7 point with everyone and every committee that I visited with, with two exceptions that I’ll talk about in a minute. In each case, the people I talked to had no idea it was like this.

Regarding the state supported living centers, I focused on two things. First, if we are going to have them we should do it right – which means strong funding and appropriate staffing for fewer of them. Second, Sen. Rodriguez has filled two bills (one is SB 729) on evaluating the SSLC’s and establishing a realignment commission for them. I wanted my legislators to know that I support both bills.

The Federal Government is making available ‘Balancing Incentive” (BIP) funds for Medicaid programs. My understanding is that this is intended to be seed money to kick start efficiencies and better service delivery. So, for example, the website I spoke about earlier is going to be funded by BIP funding. The problem is that both the House and Senate appropriations committees are sweeping more programs into this funding (because the state doesn’t have to pay for it). This is a problem because the funds will go away, so any on-going program will lose funding once that happens. This happened two sessions ago with Federal stimulus funding and ECI – ECI was ramped up and expanded with that funding, but after it went away it had to be cut back because the state would not make up the difference. This is a concern with BIP funding.

I visited with Rep. Carter’s staff. She is on the House’s appropriation’s committee for Article II (health and human services). I had written each of them about the need to fully fund ECI, which they did. She wrote me back, so I visited to say thank you. I also put in my $0.02 about the BIP funding that I mentioned above with her staff.

Rep. Raymond is the chair of the House Human Services committee. His office will either craft its own version of SB7 or receive the Senate version once the Senate passes it. I spoke with his staff about the points I described above. After meeting with me, they asked me to go talk to the Human Services committee staff about this, which I did. This (the committee meeting) was one of the longer meetings that I was in today.

As the author of SB 7, I dropped by Sen. Nelson’s office. Her office made it clear that they are not the ones listening to feedback about this bill and that I should go speak with the Senate Health and Human Services committee staff (which is located in another building). I did this, and they let me know that the only person qualified to listen to feedback isn’t available – but I’m welcome to email (which I will). I think it’s evident that the good senator is no longer desiring to hear feedback about what she set in motion from normal people.

I appreciate the time that everyone (with one exception) gave me. I think I was able to make the points about the need for significant stakeholder involvement combined with an appreciation for how complex these matters are, while everyone has great intentions there’s a real lack of understanding about the things they are trying to change. I’m also very happy because I have lots of contacts, who will be receiving my thoughts on these matters as the session progresses!

In an earlier posting, I wrote about state Senator Nelson’s Senate Bill 7 (see https://jcissik.wordpress.com/2013/02/07/senate-bill-7-long-term-redesign-an-open-letter/ ) which redesigns long term services and supports for individuals with intellectual and developmental disabilities and seeks to shift all these services over to managed care. The intent is to improve access to services, eliminate the interest lists, and improve the quality of care. All this will done in a manner that saves the state of Texas money.

A lot of people are very concerned about this bill. Many of the advocacy organizations are torn with how to proceed. Some feel the bill should be opposed; we need a smarter, more person-centered system and not a radical shift to managed care. Other organizations feel this is inevitable, so the bill should be supported but they should work behind the scenes to get the best “worst” bill that we can.

The bill was heard in committee on the 26th of February. Senator Nelson discussed the fact that she has received a lot of feedback, very little of it positive. Her remarks throughout the hearing give me the impression that no matter what the feedback is, she feels this bill is a good idea and it’s going to pass no matter what.

The hearings began with statements by Senator Nelson. She had prepared a committee substitute to the bill (I’ll talk about this later). She had a panel of experts testify on the bill, none were parents or spouses of people with intellectual and developmental disabilities and none had IDD themselves. She then took a break from other testimony on the bill to give people a chance to review the committee substitute and ask the state agencies questions. After a several hour break, public testimony began.

Some people are supportive of the bill. This ranges from family members to people that will make money off the bill. Many people were concerned about the bill. Their concerns hinged on a few things that the committee heard over and over again:

The State Supported Living Centers (SSLC’s) are not included in the bill. This is a big deal because it is many times more expensive to keep someone in the SSLC’s than to take care of them in the community and the SSLC’s do not provide many times the quality of service. In other words, huge resources are being taken out of the system to serve a few in the SSLCs and to be unwilling to even discuss this reflects a lack of seriousness for reforming the system.

There are real concerns with managed care. The state uses STAR+PLUS to provide managed care to Medicaid recipients. Senator Nelson and the members of the committee didn’t actually consult with any STAR+PLUS recipients to see how well this works. The feedback was not good on this program; lack of access to doctors, lack of consistent case management, long waits for services, that sort of thing.

The use of a medical model. Basically the concern is that IDD is not a disease or medical condition to be treated. Individuals with IDD need help and support over the course of their lives and the medical model, and managed care, aren’t appropriate ways to provide this.

Experience with other states. This is the interesting point, if I was going to transform long term services and supports I’d find out what other states do and get feedback on how well this works. Turns out the feedback on using managed care with the IDD population from other states isn’t very positive.

Finally, there’s a real concern over stakeholder input. The people receiving and relying on the services should help to design the system. This is because while Legislators and agency employees have good intentions, they don’t understand how it works or doesn’t work.

The committee substitute changes some of the language, slows the process down greatly, implements an advisory committee to assist with redesign (this is the key stakeholder input piece), and includes housing, employment, and person centered planning. All of which are positives.

Below is a letter that I sent to each member of the Texas Senate’s Health and Human Services Committee about Senate Bill 7, which seeks to shift care for individuals with intellectual and developmental disabilities over to managed care companies.

I am writing about Senate Bill 7. Your office has heard from me in the past about matters relating to appropriations and policy. I am writing to you as the parent of a five-year old with Down Syndrome. As such, this bill has a great many implications for the future of my child.

Let me begin by saying that I applaud the intent behind the bill and I think that it is necessary. Eliminating the waiting lists, improving access to needed services, and making the system more efficient are all needed goals. Having said that, there are several areas of concern which I feel that Legislators should keep in mind as they move forward with this reform of the long-term services and support system:

The need for stakeholder input

The complexity of the cases

The size and diversity of Texas

The need for stakeholder input:

There is a disconnect between the good intentions of legislation, how state agency implement those intentions, and how parents and individuals with intellectual and developmental disabilities experience those intentions at the hands of providers. Legislators need to understand and hear this in order to craft better legislation and to provide better instructions to state agencies. This can only be done via stakeholder input, by this I mean input from the parents of individuals with intellectual and developmental disabilities. This can and should be done a number of ways; first, parents with experience in STAR+PLUS and that have children with IDDs should be invited to testify as experts in front of the Health and Human Services Committee. This is essential so that the committee hear the strengths and shortcomings of the current system from the experts. This also gives parents a chance to explain their experiences and provides a stronger question and answer format from policymakers. Second, the state agencies should be required to have parents serving on all the task forces and oversight boards that will be par of implementing SB7. This will give the agencies a perspective that they often lack. Third, the state agencies should be required to implement these changes via changes in rules that require public comment. The combination of these steps will give stakeholders a chance to have input throughout the process and will result in a stronger long-term care system being developed.

The complexity of the cases:

Managed care is designed around the law of averages. For example, if you break your leg then on average it will require certain treatments and take a certain amount of time to heal. If, after the healing process, you have challenges with strength or range or motion then there are tests to be performed and rehab can be prescribed based upon the law of averages (X deficiency requires Y number of rehab sessions). If you situation is outside the norm, then there are procedures to request additional treatments.

Individuals with IDD are all different. They are all over the spectrum in terms of how their disability impacts them, how receptive they are to therapy, and what their needs are. IDDs do not lend themselves to “treatment” based upon the law of averages. As a result of this, any system that is designed is going to have to be incredibly flexible. This can be accomplished by getting stakeholder input in the design so that policy makers and implementers understand what is needed and by carefully screening potential managed care organizations to ensure they have experience with this type of population.

Texas is a big state:

Legislators don’t need me to remind them of the size of Texas. But it’s important to understand that there are still a large number of small towns and rural areas that do not have the same access to services as large urban areas like Dallas. A managed care system has the potential to work fine in a large city, but be a disaster in west Texas or east Texas due to a lack of access to providers. It also must be understand that the huge cultural and language diversity of Texans has the potential to complicate managed care and this must be taken into account when designing the system.

Thank you for your time and efforts on behalf of Texans. I appreciate your desire to help increase my son’s access to services and the quality of his life, but I want to ensure that the new system is designed in a way that understands that he is not a number that needs to be treated.